PBS高端访谈:疾病教会人们如何坚持

（单词翻译）

Judy Woodruff: When Beth Papanastasiou's daughter Bella was born, she was diagnosed with a rare degenerative genetic¹ disorder² and given 18 months to live. In tonight's emotional Brief But Spectacular, we meet mother and daughter four years into their journey, a journey on which Papanastasiou says palliative care is key to making the most of her daughter Bella's life.

朱迪·伍德拉夫：当贝丝·帕帕纳斯塔西奥的女儿贝拉出生时，她被诊断出患有一种罕见的退化性遗传病，并给予18个月的生存期。在今晚饱含情感的“简短而伟大”节目中，我们在四年的旅程中遇见了这对母女，帕帕纳斯塔西奥说，姑息治疗是充分利用女儿贝拉生命的关键。

Beth Papanastasiou: My daughter Bella is 4-and-a-half years old now. About seven hours after she was born, she was transferred to Children's National. After about two weeks in the NICU, they informed us that Bella had a very rare genetic disorder called Pontocerebellar hypoplasia, type 6. And at that time, only about 12 cases had been reported in the world. And they did let us know that, in most of those cases, the children did not live past infancy³. And that was truly the start of our journey and our life with Bella. When we first brought her home, every day, I felt like, well, today could be the day that we lose her. The PANDA team at Children's National is the palliative care team that works with families who have children with terminal conditions or other very serious conditions. They have been through it, and they have been through it with other families. The hardest decisions that we make with the palliative care team are deciding at what point Bella is still fighting to be with us and at what point do we know that Bella is tired? Having the support of the PANDA team is crucial to my ability to care for Bella the best way possible and just give us the support and strength that we need to get through living with a child who you know will likely pass before you do. It's going to be a little bit different for Bella, what you want for your child. And what I want for her is that she reaches the potential that she is capable of. What I want for Bella is that she knows that she's loved, that she knows that we are here for her and we will fight for her, and that she experiences life in the way that she can. She keeps me going, because, if I stop, there's no one for Bella. And I have to get up every day and I have to take care of her, and I have to struggle with her and laugh with her. And if I'm not there to be that person, then I'm letting her down. And she doesn't have enough time to be let down. My name is Beth Papanastasiou, and this is my Brief But Spectacular take on my daughter Bella.

贝丝：我女儿贝拉现在4岁半了。她出生后大约7个小时，就被转到了儿童全国组织。在新生儿重症监护病房大约两周后，他们告诉我们贝拉患有一种非常罕见的遗传性疾病，叫做脑桥小脑发育不全，6型。当时，全世界只报告了12例。他们没有让我们知道，多数病例都没有活过婴儿期，那真的是我们旅程和贝拉生活的开始。当我们第一次带她回家时，每天，我都觉得，嗯，今天可能是我们失去她的日子。国家儿童协会的PANDA小组是一个姑息性护理小组，负责为那些有晚期疾病或其他非常严重疾病的孩子的家庭提供帮助。他们经历过，他们和其他家庭一起经历过。我们与姑息护理团队一起做出的最艰难的决定是，在什么时候贝拉仍在努力与我们在一起，在什么时候我们才知道贝拉累了？有PANDA队的支持对我有能力以最好的方式照顾贝拉是至关重要的，只要给我们支持和力量，我们就可以和一个你知道很可能会在你之前去世的孩子一起生活。对于贝拉而言可能会有些不同，你对你孩子的期望会不同。我期望她的是她可以达到自己的潜能。我期望的是她能知道她是被爱着的，她能够知道我们都在为她努力，我们为她奋斗，让她知道要用自己的方式去感受生活。她让我继续，因为，如果我停下来，就没有人为贝拉奋斗了。我每天都要起床照顾她，我要和她斗争，和她一起笑。如果我不是那个人，那我就让她失望了。她没有足够的时间让她失望。我的名字叫贝丝·帕帕纳斯塔西奥，这是我对我女儿贝拉的“简短而伟大”的描述。

Judy Woodruff: It is so clear that Bella is loved. And we thank you, the Papanastasiou family, for sharing Bella's story with us. And you can find all of our Brief But Spectacular segments online at PBS.org/NewsHour/Brief.

朱迪·伍德拉夫：很明显贝拉是被爱着的。我们感谢你，帕帕纳斯塔西奥一家，与我们分享贝拉的故事。你可以在网上PBS.org/NewsHour/Brief找到我们所有“简短而精彩”的片段。